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starting on the journey

bertieh

Hello

My 8 year old son has just received a diagnosis of ASD and it has come as a relief to be honest, as we have always known that he needed a little more help to understand the world around him.  We haven't talked about the diagnosis explicitly with him yet as I have been advised to make sure that we have some other support mechanisms in place first, such as the school calling in the ASD service - however, he is of course aware that he has been for assessments and that there are lots of people trying to help him.  We are in that limbo period of having a diagnosis and us, as parents, finding out what help and advice is available and where and how to access it.

I am sure that  all this has sparked some extra anxiety in him, as his behaviour has become more unpredictable and difficult to manage over the past few weeks.  He is responding more severely to sensory issues and talking (again, unfortunately) about wanting to kill himself, and now even wanting to kill me.  I know - i hope -  he doesn't mean these things -  the killing me part is his way of expressing how frustrated he is feeling  - but I am not sure how to help him. He has talked about suicide before and has a plan - CAMHS are aware but don't think there is a mental health issue.  For example, some of his frustrations today are that  he is upset because I have to go to work tomorrow on what might be the hottest day of the year, that the hairdryer was too hot, that he can't whistle.  He has started trying to run off across the road as well, and hitting me in public - and it's difficult to know what to do in that moment when I have another young son to look after too.  I try to remain calm but it's not always easy. 

 I know these are all expressions of his frustrations - but I am struggling with knowing what to do to help him through these bad times and also to know what to do to just manage.  I know he'll be worried about starting back at school after the easter break too.  I just want to do the right thing to help him.

thanks - sorry, just needed to get it all out!  I know that hopefully we will be able to access some help and guidance soon, but it's all still bewildering.

  

  • Hi bertieh,

    I was so pleased to receive your message...I have been thinking about you and your little boy. No need to thank me. Welcome to the ASD community...all we parents can do is look around at the different bits of experience and advice that other people in the same situation have and try things out. Its good to chat on a site like this as its so easy to become isolated by autism...and that's not just the child with the condition but the family as well.

    I remember when our grandson was small that he was having trouble piddling where he was supposed to. Somebody told me that putting a ping pong ball in the loo would give him a target to aim at and an incentive. It worked alright...he would aim straight at the ball....unfortunately he would then pick it out of the loo and throw it down the stairs dripping haaaaaaa. It was back to the drawing board after that!

  • I am so sorry that it's taken me so long to reply.  I just wanted to say thank you, from the bottom of my heart, for taking the time to reply and reach out to me.  We have been trying some of your very useful suggestions and they have helped.  Some days are better than others and there will always be challenges along the way and we all do the best we can!  Thank you so much. xx

  • Hi bertieh,

    We have been raising out grandson who is now 14 since he was not quite 5. So many of the issues that you have raised about your son sound very much like the challenges that our grandson faces. He hits us in public (and private), and the talk of suicide has become a sort of mantra to him over the years. He will say...if they make me do PE at school tomorrow I will kill myself.....if it rains today and I can't go out I will kill myself. Plus he will threaten to hurt us or kill us as well. 

    Your son will be feeling confused not only about himself but also the fact that he knows that people are talking about him which will be difficult for him. He desperately wants the world to work for him and he can't understand why it doesn't. 

    I would encourage you to push for a CAMHS appraisal...even if he doesn't mean the suicide threats (which I am sure, like our grandson, he doesn't) its a sign that he is very anxious. Anxiety is part of the CAMHS remit. If a neuro typical child was showing serious signs of anxiety they would be referred to CAMHS because that's the mechanism for getting a child support. Your child is just as entitled to be assessed for anxiety arising out of his condition as any child without the added complication of ASD. We did exactly that...went to the GP and told him that we were worried about his anxiety levels. He now has a psychiatrist treating him at CAMHS.

    I find that distraction techniques can take the sting out our grandson's anxiety about things not working for him. I would give him something fun and exciting to think about when you get home from work...maybe a picnic in the garden which he can prepare for during the day or our lad is a sucker for a bag of goodies and a film. Try getting your grandson to dry his own hair...it wont seem half as hot if he is doing it himself and the sensory issue may be less. When we go out our grandson always gets a reward when we get there and when we get back...so a cuppa in a cafe if he stays calm and something nice when he gets home. It wont always work by any means but its worth a try...anything is worth a try. 

    Even if you don't feel ready to talk to him about ASD specifically yet you can talk to him about how he feels different from other children and that its perfectly ok to be like that. 

    Hope that at least one or two things here might help. I have just muddled through trying things out and sometimes rethinking and having another go like the other parents on this site. 

    Make sure that you look after yourself...that's really important because without you, your son would be a darn sight worse off. Don't forget to treat yourself...however small and find time...even short amounts, if you can, to retreat. You are doing a very challenging and difficult job and you deserve a huge amount of praise.